EOF - Why We Need Hackers to Fix Health Care

Some of the most dangerous closed and proprietary systems are the ones you trust to save your life.

My mother died five years ago of a stroke following an endoscopic procedure
to remove a gallstone. The procedure perforated her duodenum, and digestive
fluids leaked into her abdomen. She spent the next week in the Intensive
Care Unit, fighting for her life. She was tough and lived through it, but
the stroke got her a few days later.

The stroke probably was due
to a blood clot, which probably formed because she was off her blood
thinners. That was a medical error that might have been prevented
had her gastroenterologist and her cardiologist been communicating with
each other. My sister and I blame ourselves for not making sure those guys
were talking. But, I also blame the hospital's IT system, which
failed to keep both doctors in their shared patient's loop.

I also should have suspected the IT system of suckiness, because I brought
it down myself one day while visiting Mom by using
a browser on one of the nursing workstations there. I was surfing for about
ten seconds when every screen in sight went blue. Shocked and concerned, I
asked a nurse if this happened often. “Happens all the time”, she said.
“It's a new system.”
Of course, it ran on Windows.

This year, I had my own encounter with sucky systems. It started in April
after I had a pulmonary embolism (a blood clot) in my right lung. While
looking for the clot's possible sources, a CAT scan showed a cystic lesion
on my pancreas. My gastroenterologist ordered an MRI, which showed more
cysts. Radiologists said it wasn't clear if one of the cysts was
communicating with the pancreatic duct, so my gastroenterologist recommended
an endoscopic procedure to look up the duct and see what was going
on—the same procedure that put Mom in the hospital.

The doctor told me before the procedure that there was only a 5% chance of
getting pancreatitis from it. I said okay, and we went ahead with it. The
next morning pancreatitis struck, and I spent the next nine days in the
hospital taking no food or water while massive quantities of fluids were
dripped into my veins. Pain was addressed with enough Demerol, Morphine and
Dilaudid to satiate a junkie.

As I write this, I'm still recovering—and still in a state of mystery
about my pancreas. The procedure did not see a cyst communicating with the
duct. Neither did a second team of radiologists that viewed the same MRI.
That team said I didn't need the procedure. But the word came too late,
when I was already in the hospital.

One reason we couldn't get the MRI CD to the second team earlier was that
we couldn't find a machine to read it. It wouldn't load on my
gastroenterologist's Windows machine or on either of my Linux
or my Mac machines. All I could see was a pile of Windows
binaries and files.

So, although it was our error to hasten a procedure I didn't need, I also
blame a system in which too much tech doesn't work, doesn't communicate
with other tech, or doesn't use standard image and text file formats that
any machine can read.

Among the many doctors I met in the hospital, one stood out, because he
alone addressed the problems of bad data and bad communications. He said
that the whole medical system is corrupted by collusion between equipment
makers, software suppliers and institutional customers. The result is many
closed systems, all lousy at communicating with each other. He said we
need open systems, with data built around patients rather than locked
inside closed silos. He liked Google Health, because at least it
was trying to solve the problem from the patient's side, by making the
patient the point of integration for health-care data from many different
sources. (Microsoft also seems to be doing something similar with
HealthVault.)

The whole matter of Personal Health Records (PHRs) is a complicated one.
There are many open-oriented efforts going on there, and I hope one or more
of them succeeds. Meanwhile, countless thousands of people die every year in
the US alone from bad data and poor communications among health-care
providers. This problem cannot be fixed from the top down, no matter how
open its code.

It has to be fixed from the bottom up—by hackers and patients. Hackers
need to build (or help health-care software companies build) new systems
using free software and open-source code, so those systems can be improved
and made more compatible on an ongoing basis. Plenty of
money can be made selling systems and servicing them. You don't need closed
code for that. Patients need to become platforms. Each of us needs to be
able to gather, control and share our own health-care data, on our own
terms—quickly, easily and securely. So services can be based on what
makes each of us unique.

When I suggested this in a post on the Linux Journal Web site, some skeptical comments followed, especially
from veterans of The System. But, their arguments were the same kind I heard
30 years ago against personal computing and open networking—that they
were a cool idea, but that the Big Boys would never let it happen.

We know how that story turned out. I'd like the health-care story to turn
out the same way. We need open-source hackers to make that happen.
Preferably while I'm still alive.

Doc Searls is Senior Editor of Linux Journal and a fellow with both Berkman
Center for Internet and Society at Harvard University and the Center for
Information Technology and Society at the University of California, Santa
Barbara.

The problem isn't that the hospital IT infrastructure isn't perfect, the problem is that there is an expectation that it should be. That may be hard to swallow, so let me explain...

You wouldn't expect your doctor to say to you, "Well, I asked the cardiologist to email me if he found anything bad in your EKG, there's nothing in my inbox, so I guess you're 100% healthy to go run the New York Marathon!" What if the email is in the SPAM filter? what if the inbox is full? what if the server is down? There are a myriad of reasons where this process could fail. For that matter, this applies to any IT system with the same disastrous results.

The point is the doctors, radiologists, surgeons, specialists and technicians, pharmacists need to be communicating with each other, but it's a fallacy to lay that responsibility at the feet of IT system. It's the job of the IT system to make that EASIER, not see that it is being done.

So what if the systems are disparate and incompatible? If you need to see the MRI, go walk down to the MRI lab and ask them to show it to you on their system. Can't open the XRAY attachment? Walk down to radiology and ask them to bring it up on their equipment. I realize this is a huge PITA, but as you correctly point out, people's LIVES depend on this! What possible excuse can anyone come up with that trumps that? It's too far to walk? I'm too busy? It's too hard? The radiologist keeps trying to fix me up with his sister? Please.

I think a blanket prescription for better technology would only be treating the symptom, and fail to cure the disease.

Amen, the need is huge and the changes that having patient data as well as claims data and every other aspect of the Healthcare as well as Diseasecare online would completely alter, for the better, each of our experiences.

For me as a Physician, it would revolutionize my experience if I could check my schedule, and see which patients I am seeing in coming weeks. It would be great if I could, from almost anywhere, access patient data, update charts, add notes, fax or email or mail out or at least print out documents to help cases along.

I subscribe to several trade journals devoted to healthcare informatics, health data management and other such topics. All those journals are funded largely by megaliths who design EXPENSIVE software to run hospitals and expensive clinics, and which appear, from my view point aimed at enriching them, more than simplifying or smoothing the experience for those hospitals, clinics, doctors, staff and patients.

Where to start though? I am experimenting with a few software packages such as Clearhealth and others, to help wean my office off Windows once and for all, and just run a pure linux environment.

Is there a group of likeminded health care professionals, including nurses, PA, physicians, and others devoted to accelerating the move away from microsoft based systems to linux based?

What a great article. Open source health care advocates should check out an open source Personally Controlled Health Record (PCHR) application at Children's Hospital Boston called IndivoHealth, http://indivohealth.org. It is currently being implemented at Children's Hospital and The Dossia Consortium, http://dossia.org. I would encourage everyone interested in the type of system you described in your article to check out both these websites.

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